The Issue of sickle cell disease
has been one on my mind for many years. One of the reasons is mainly because I
suffer from SCD myself. I have had many people say to me, Oh, you do not look
like a sickle cell patient..; I believe that's just due to God's infinite grace
(as well as my inherent good looks, of course).
So I am not going to go into the
description, definition and analysis of what the condition is, there are many
journals out there that have done a much better job than I could ever achieve.
What I can do though is bust a
few myths:
Myth #1 - Sickle cell
patients do not survive past the age of 25. Okay, this is a difficult
one. I know of people who died quite young as a result of complications due to
the condition when they went into crisis. My mother used to take me to the
Sickle Cell Clinic in Korle Bu General Teaching Hospital for my routine
check-ups (anybody know Mr Lamptey, the then Clinic administrator?). There, I met
a young girl my age whose mother was my mum's school mate. We used to meet at
these clinics and there were often shy 'hellos' followed by long, meaningful silences. When we got to Secondary Form 3, Nadine died suddenly
from complications from having her menstrual cycle. That was what I was led to
believe anyway. Following that, in 1980, a couple of school mates died from complications as well as a
cousin.
My father, however, lived to be 82.
I am now… maturing, so the age thing is not really true. There are various forms of
the disease and those with SS strain are more likely to succumb at an earlier
age than those with SC. But the “dead at 25 is (was) a generalisation that many
have wrongly made.
Myth #2 – All sickle cell
patients need regular blood transfusions. Not all, some do, but when in
crisis, what I need most are fluids. My treatment really is saline fluids by
intravenous transfusion. Some strong pain killers too, but sadly, I have had to
justify this to my local A&E on many
occasions. Since Whipps Cross Hospital seemed to have dome away with the crisis
pathway for Sickle cell patients, there seems to have been nothing but continual
arguments with medical professionals. Some “experts” have even suggested that I
try alternative treatments like the use of stability balls to relieve the
discomfort.
One thing I do is drink a lot of
water, as much as I can manage (depending on the availability of toilet
facilities).
Myth #3 – The regular use
of strong pain killers will turn sickle cell patients into addicts. I
have regular prescriptions for strong pain killers like Tramadol, diydrocodeine
and diamorphine. Most days, I function quite well without these strong meds,
but sometimes it is hard to ignore the pain. Managing the skill and developing
the ability to perform adequately as an adult under the influence of strong
medications has been something close to an art, that I have had to develop over the years. Sometimes,
my reaction to the side effects of the medications can mean an early phone call to work to say I wouldn’t come in. Not many employers or managers have been accommodating.
I have never been so insulted by medical professionals as when they have tried
to suggest that I take less of painkilling medication and deal with the consequences.
Or take up, pilates…..
Myth #4 – Sickle cell
patients cannot take up physical exercise: I took part in active sports
till September 2005 at least twice a month. Sadly, in September 2005, I went to
play football with the guys after work and ended up in hospital for 12 days with
pneumonia like symptoms and a blood clot on my left lung. That put an end to my
budding footballing career, and Arsenal lost out on a world class striker that
year. (I am talking about Henry, after 2005, he moved to Barcelona.) These days I
do a lot of walking and moderate tasks for cardio vascular stimulation. Of course,
as I have got older, I enjoy watching people on TV getting the cardio exercise
that I need, and I am currently developing a process of mind transference so
that I can equally benefit from athletes performances, just by me sitting on my
couch.
Myth #4 – There is always a
trigger to crisis: Not always, sometimes you just get unwell. It may
have been due to an infinitesimal sequence of events or seemingly innocuous
actions that you may not have taken seriously, quick trot for the bus (that
gives me chest pain, so I no longer run for the bus); getting caught in a cold shower: enjoying too much sea air on a summer’s day (10 days in Whipps Cross
after church trip to the coast); but I seem to have developed some internal
sensors that warn me of when a crisis is looming so I need to slow down.
So those are some of the myths I aim
to dissipate with stories of my experiences.
So what would I like for the
future? I don’t know really, maybe access to a disabled car park once in a
while so that I can drive to work on bad pain days; that I do not have to pay
fully for all my medications every time I need them since I use them quite
regularly; managers who will be flexible
enough to support staff members with a condition that has unpredictable onset.
I would also like people to just
not assume that all I have said here relates to all sickle cell sufferers.
Please speak to the individual you know about their experiences; they may not
be the same as mine. We may have shared experiences, but not necessarily have everything
in common. What we seem to share in common are the negative attitudes we face from some
managers, work colleagues and medical professionals.
There! My public health campaign
for the year completed.
